Welcome to Zeke’s CaringBridge Site
Sign In to Show Your SupportWe have officially been home for 1 week. Most things have gone wonderfully. Zeke's incisions have been healing nicely. He is tolerating the pain well and only taking motrin and tylenol. He doesn't seem bothered by his incisions, and he was quick to return to his normal playful self.
Jack returned from the ultimate vacation: a long weekend in the Wisconsin Dells with his Aunt Kaley & Uncle Jake + his 4 cousins, followed promptly by a 5 day quarantine with Grandma. He had a blast and believe it or not, didn't get sick! The only downfall: a 3 year old post vacation and post Grandma; there were a lot of time outs that followed, but we are working through it.
So what does post surgery mean for Zeke? As far as the hernia, hydrocelectomy, and circumcision goes there's no real follow up. His doctors will continue to check for hernias, but other than that he is good to go. For tubes, he has a follow up hearing test on April 21st. We are praying that this cleared up the issue. While it's been clear he's always been able to hear, it seems like he can maybe hear us a little better? Honestly not sure. We will find out!
So when I say, "most things have gone wonderfully" why did I emphasize most ? Well as you've read from other posts, it is difficult to feed Zeke. Only 2 nurses could do it at the hospital and Zeke only eats for me at home. In the 7 months Zeke has been eating by mouth, I would say 80% of his feedings have been difficult. He gets grouchy, doesn't want to eat, barely makes it to hydration, and my personal favorite: GARGLES IT AND SPITS IT IN MY FACE. Every time he does it, I know it's got to be the milk I pumped at 2:00a while he was in the hospital and I called to check in on him. (my least favorite time of pumping: middle of the night + so much anxiety to hear how he was doing).
So what have I been doing to help fix this problem? Well I'll get to that, but the consensus I hear from medical professionals is that feeding former preemie babies is difficult. It is worth the fight and if he is growing it's much better than getting a G-tube place. Persist on, I've got about 5 -6 months left. I promise you no one is trying to brush me off in this advice, but it is what it is I guess. So I am doing my best. Every time he is weighed, he has gained just enough to fly under the radar. I requested a swallow test and consult from a speech therapist. I just want to cover all my bases and make sure there isn't an underlying issues that I am not seeing. Hoping to get that scheduled soon!
So now I take my question to you. Any advice on how to feed a baby? Before you answer, here's what I have tried. Some of this is weird. But I am desperate. Some of it might not be considered "safe eating", but he doesn't choke or arch his back or anything that show signs of aspiration. This list is going to be comprehensive so if you don't like long posts, go ahead and close out now because I'm about to get ridiculous.
I'm quite certain I've done more, but that's all I've got for now. So now for everyones BIG reveal, the moment you KNOW you've got the answer. Do you get stressed out while you feed him? Babies are VERY sensitive to that and will easily pick up on that. The answer: ABSOLUTELY. To put it lightly, I get angry, I cry my eyes out, say things I am certainly not proud of, I have to put him down while I sprint around the house asking whhhyyyyyy. So sure does that contribute? You better believe it does. I wish I could get better, but the pressure to feed him is a weight that is so immense on my shoulders, I could give myself an ulcer. Well technically my immune system gives me ulcers frequently because I have Crohn's disease, but that's another conversation that's far less interesting. (I'm trying to lighten the mood here with a joke about a chronic disease I have, laugh, don't feel bad).
So why is this pressure SO immense? Good eating = growth = new lung tissue = getting off oxygen sooner, dropping meds, easier for him to sit up, walk, crawl, etc., less likely to be effected by illness = our life becomes a little more normal.
Your suggestion to that that? You're putting too much pressure on yourself, he's doing great, look at him! I wish I could talk myself out of it. I've tried. But it's a fact I can't ignore, and God has called me to be Zeke's mom, and so I'll be a crazed person trying to feed our little guy.
Riley has tried REALLY hard to help me. He's done everything I have done, but Zeke will barely take an ounce from him. We don't really want to go days with Zeke barely eating, so eventually I have to step in. He has occasionally taken a 4oz bottle from him. We celebrated.
SO now things get really interesting, (not really) what have I been doing to not stress while feeding Zeke? Because honestly I work SO SO SO hard to not be stressed, so that Zeke eats well. Sometimes it works and sometimes it. does. not. matter.
Basically I do anything I can to distract myself from: he eats well = Zeke gets better
I'll never, ever forget begging God to let me feed Zeke. I waited 4 months in the NICU. It was such an answer to prayer. And now its the thing that almost tortures me, dramatic I know, but oh my gosh I've never felt so mentally weak. I have never tried so hard at something and failed. I know, he's slllloooowwwllly gaining weight. But it's hard not to feel that way when you've worked so hard to just reach hydration.
So what are your suggestions? Even if I've tried it, I am willing to hear you out. I think I can go 5-6 more months, I just really don't want to. Zeke recently started some solids. It's going ok, but nothing too exciting. He is still working on sitting without getting too fatigued.
Zeke's amazing. Eventually the phase may be funny to me (probably definitely not). He's worth the work, but if you've got a suggestion. Hit me with it. As you can tell, I am willing to try ANYTHING!
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